Tuesday, June 16, 2015

Therapy update, bone age test and end of another school year!

We had a great appointment with the physiatrist, Dr. Morozova.  She was very pleased with Reagan's progress and we had a heart-to-heart about therapy.  She said that research actually shows taking time off can actually help progress long term.  I spoke with Reagan's PT at the next session and we will be reassessing her next week and then make a decision.  Given Reagan will be in school full time in the fall, getting the much-in-demand 4pm therapy appointment will be difficult.  Not to mention getting TWO (one for each child and another one for PT).  As you probably remember, we had to be removed from the INOVA therapy schedule since we'll be missing more than 2 weeks while we are at John's Hopkins - Kennedy Krieger.  We are on the wait list for Fall and will see how that goes.  However, the idea of cutting back on therapy is very exciting given we expected to be going for several more years.  Even taking a few months off after John's Hopkins would be nice.  Reagan has had PT every week or every other week for 6 years now.  That's close to 300 appointments!  If you add another 300 for weekly OT that's over 600!

Unfortunately Reagan has started having pain in her left leg rather consistently so the PT recommended we start more consistent stretching.  As you may remember, the leg brace she used to wear forced her ankle into a 90 degree angle.  Now that she's not wearing that, her toe tends to drop and she's not getting the stretch in her calf that she used to get.  We were able to purchase some stretch bands and it has become a group activity with the kids. The other day Reagan decided she needed to stretch until she counted to 120.  Great practice all around for her and Cole!  We are hopeful the stretching helps.  As long as she doesn't start to fall more I don't expect we will have to go back to wearing a brace, but that's definitely on the table for discussion given the pain she has been having.

In addition to the physiatry appointment, Reagan had her 6 year pediatric appointment. Although her appointment went well, the pediatrician has some concerns about a possible imbalance in her hormones.  She ordered a bone age test which involves an x-ray of her hand to determine if her "bone age" matches her "actual age".  Luckily the results came back normal, but she is still concerned so she is recommending we consult with an endocrinologist.  I've made the next available appointment for October and we will be having blood work done prior to that to start developing a baseline and see if there is anything we should be concerned about.  Apparently children with cerebral palsy are at higher risk for these types of complications.

To end with some exciting news, today is the last day of Kindergarten for Reagan and the last day of preschool for Cole!  He will be in the pre-Kindergarten classroom next year still at Potowmack Elementary School and Reagan will be in first grade.  His classroom will be a reverse-inclusion class so it will be all rising Kindergarteners with half normally developing peers.  He's very excited!  Reagan is excited about first grade…mostly because she will be able to eat lunch there.  Both are very sad to be leaving behind their amazing teachers.  I haven't told them they won't be riding the same bus next year…we'll save that for the end of summer.  And with that, we are excited to start the summer and have some pool time before camps, vacation and our trip to Baltimore in July.  And unless we run into illness, we have NO doctors appointments until Reagan's eval at UVA at the end of August!  YAHOO !


Monday, June 1, 2015

The good, the bad and the ugly - Neurology, Low Vision, Pediatrician, and the Magic 6!

Time flies when you're busy!  I promised an update after the neurosurgery visit and I got caught up with life and forgot.  Yikes!  I told Johnny the other night that I always get an eerie feeling when things feel "normal" - like the shoe is about to fall.  But I do try to remind myself that it is possible for life to feel "normal".  Anyway, I have several updates…

Unfortunately I needed to move both neurology appointments due to scheduling issues and the wait was close to 4 months with the neuro we usually see.  So at the end of April we got an appointment with the nurse practitioner.  Given the expected medication increase for Reagan, we didn't have the luxury of waiting four months.  We met with Stephanie Stavish (instead of Dr. Lavenstein) and she had an excellent bedside manner with the kids and the appointment went very well.  We had several years of history to run through quickly with both kids, but I was VERY impressed with her knowledge of their complicated history coming into the room.  Overall she said the kids were looking great and based on Reagan's weight gain agreed that we needed to increase her seizure meds from 5ML to 6ML twice a day.  Her recommendation was to increase at night only for one week and then increase the morning dose a week later.  We followed that instruction and it did NOT go well.  Since Reagan started the morning meds and would go straight to school I hadn't seen how the meds were working. On the Thursday after the increase (day 4) I volunteered in the classroom and Reagan could barely function she was so heavily sedated.  I felt horrible we had gone 3 days without realizing her little body couldn't handle the 1ML morning increase.  So we weaned back down and did a more gradual increase over the next two weeks and she's now well adjusted. Definitely something we'll approach more cautiously next time.  As we left the appointment I asked if we could wait a year for the next appointment and she said no…she felt we really need to still come every 6 months.

In the middle of May we had our appointment for Cole with the Low Vision Specialist, Dr. Alibhai.  Cole's vision specialist from school joined us for the appointment and it was very helpful not only to share her professional feedback, but also to see the eye exam and hear the recommendations from the doctor.  Although I was very happy with the way the doctor engaged Cole in discussion and really worked to read him, it was a very tough to hear his opinion on Cole's visual abilities.  When covering his left eye, Cole was unable to read the eye chart at all regardless of how close he was to it.  When covering his right eye, he was able to read the top few lines at close range, but nothing more.  The doctor was also able to test his ability to see contrast and develop a contrast requirement for his vision.  So you are probably wondering at this point what the benefit of a low vision specialist is over a traditional ophthalmologist?  Great question.  The ophthalmologist we see helps prescribe glasses, identify developmental changes and possible surgery options.  The low vision specialist is an optometrist and his focus is what accommodations and assistive technologies could be used to help Cole.  Unfortunately, his prognosis of Cole's vision was slightly worse than the ophthalmologist and he said Cole can see at 20 feet what the average person sees at 500 feet with the left eye and at 800 feet with his right eye.  He said without his left eye he will be completely blind (not the first time we've heard this).  When I asked if Cole will ever be able to drive, he said, "who knows, you should ask Google."  Apparently they are testing Google Chauffer and not only is the driverless car technology funded by the DoD at $2M, it has already passed legislation in four states and DC and these cars are on the road! They will be commercially available in 2020!  Just to let you know, Cole will be 16 in 2026.  My question is…if it's driverless then do you still need to be 16?  You technically don't need a "driver's" license if it's driverless right?!  Hmm...

We also had a tough conversation about accommodations.  He said it will be too difficult to increase the size of the worksheets in Kindergarten for him to see them so he is recommending a Closed Circuit TV (CCTV) for him to use at school.  I don't know why I didn't see this coming, but it was a huge kick in the stomach for me.  I guess I was still holding out hope that Cole would be able to see his work like other kids but just have to hold it closer.  I'm now very torn on how to approach this new set back.  Unfortunately with recent cut backs the State no longer provides the equipment.  So it will have to go through a special request process to the Loudoun County Assistive Technologies Center.  If we ask for it now and he's not quite ready to use it then we'll have outdated technology when he IS ready.  Not to mention, I'm completely overwhelmed with the options.  For example, the unit the doctor showed us is completely stationery.  Reagan currently moves from table to table for her "center activities" in Kindergarten.  When I asked him how Cole would do that, he said he won't and that I need to recognize that our most important goal is to provide him an education.  But as his mother, I also worry about how he will learn to socialize, how to share crayons, and how he will feel when he has to sit by himself.  Definitely first world problems, I get that, but still so hard to know HOW and WHEN I should be advocating and for WHAT.  I also asked the doctor what accommodations I should request for outside of school activities like the music classes he was taking or Tae Kwon Do class.  His response?  "Danielle - after Cole leaves the education setting, no one will care about him.  You can't follow him everywhere he goes.  You must learn to let him advocate for himself and let him ask for what he needs.  You can't always be there to get him help."  So true…but so hard to accept especially at age 4!  Cole is doing much better at Tae Kwon Do, but there are still times he struggles to follow along and I can't help but wonder if he is having trouble seeing the Master and what he is supposed to be doing.

The Doctor also had him try using a monocular and try to focus the CCTV unit.  The benefit of the CCTV technology is that anything can be placed under the projector and it displays on a big screen.  Cole can then zoom in and focus as he needs to based on the size of whatever he is viewing.  After a long conversation, the doctor recommended we continue to see him every 4 months to follow up and determine what additional help Cole may need.  Begrudgingly I added yet another specialist to our "see you in 4 months" list and left knowing that my research project just got a lot longer.

I have since found great information on the American Federation of the Blind website and on the National Federation of the Blind website.  I also found a Technology Center for the Blind in Baltimore and have contacted the coordinator to schedule a visit of the facility.  There will be a lot big decisions to make when selecting equipment such as, should it be handheld or portable?  If it's a fixed unit in the classroom he won't have access to it in the library, art or music class.  Also, I'd like a unit that can take snapshots of what he is viewing that he could view later.  The unit we saw in the doctor's office also allows you to rotate the head of the projector so he could zoom in on content being projected on the board at school or on a promethium board.  Another question, though, is at what grade is the majority of content on the promethium board (not worksheets) such that an iPad app that projects that content may be a more suitable technology.  This technology currently exists, but after a conversation with the IT person at the school, it's possible the WiFi/app configuration as it currently stands may not allow it.  Luckily I have a technology background so I know the questions to ask.  But it really comes down to figuring out WHEN do I ask for WHAT knowing full well that it will take months to go through the request - process - approve - purchase - integrate timeline.  So we go back in September and until then it's back to the research I go….

A much less taxing appointment was Reagan's 6 year pediatrician's appointment.  I always ponder what it's like to only have that one appointment every year that most kids have.  And I can sum it up in one sentence.  She's growing right on the curve and looks great!  So easy…

And with that, Reagan is now six!  She had a fun celebration at the house with a few close friends, classmates, and a hilarious magician named Louis.  I was a little worried the kids may not understand the magic tricks since there were several younger kids, but with capes, magic hats and wands in hand, they watched the show and laughed hysterically!




Next up is physiatry and then we're going to enjoy some summer fun before we head to John's Hopkins - Kennedy Krieger in July.  And as promised, I have started adding funny lines from the kids.  Although this one may be slightly rated R, it really shows Cole's character so I can't help but share it.

We are still working very hard helping Cole to be fully potty trained.  It has been a long road and although he's doing well, he still has some days that are harder than others.  Last week he was going to the bathroom and said, "Hey mom.  I just peed a straight line and then a drip.  That's kinda like the letter "i".  You know, the lower case one." I couldn't help but laugh, encourage him to continue to dot his i's and we carried on with our day.  The next day he was going to bathroom again and said, "Hey mom.  I peed a straight line again but there wasn't a drip."  I said, "so I guess it's not an "i" then huh?"  He said, "well it's not a lower case "i", it's more like a capital "i"."  All I can say is YUP, you got that right kid!  

When I think about how much he has overcome already and how much he has still ahead of him, I can't help but marvel at the way that he thinks and wonder where his life will take him.  I try to remind myself when I get sad about him not being able to drive or having to sit by himself in Kindergarten that his life is an open book and it's up to us to help him see how wonderful that can be.  And although some days are harder than others, like when he got a goose egg from walking into the key making machine he didn't see at Home Depot or when he face planted into the rock wall in the basement because he didn't see someone on the swing, I remind myself that this is all he knows.  Our attitude will drive how he approaches life and whether he jumps back up and asks how high.  I can't fix everything, but I can love him with every bit of my being and teach him to face life head on…and some days that's just enough to feel like we can make a difference.

Wednesday, April 22, 2015

Neurosurgery and Opthalmology Updates

We've had two doctor appointments that I'd like to share.  The first is that both kids had their annual appointments with Dr. Myseros, their Neurosurgeon last week.  Although they were not very well behaved in the appointment, it was good to catch up with him.  He said both kids are looking good and he'd like to see us again in a year.  Before the next appointment he'd like us to do another brain scan for Cole to verify how his shunt is functioning.  A few months ago we had a scare where Cole was complaining of intermittent head aches and even threw up once.  I know someone whose son recently died from a malfunction, a friend who's daughter had to have surgery last week because of a malfunction and I had a meeting yesterday with a colleague who is waiting for an evaluation next week and expects to have her entire shunt replaced.  The fact that this can and WILL happen is very real and always in the back of our minds.  My friend recommended we start talking with him about his shunt and what it is so when we do have complications it's a little less scary.  Luckily we have a great book called Me and My Shunt that we plan to start reading to both kids to teach them about Cole's shunt.

I had numerous phone calls with the new nurse practitioner, Devon, about the headaches and whether we needed to bring Cole in for test to determine if he was having a malfunction.  She was great about following up with me and asking lots of questions. Given the head aches onset quickly and then stopped we decided to wait and just track the frequency and duration.  There is a test called a shunt series that will determine if a shunt is malfunctioning, but they were worried if he wasn't having symptoms that the test wouldn't catch the problem.  When we walked in to the appointment and I saw Devon I immediately realized I knew her.  I looked at her and said, "Children's Hospital, 2009, Neuro Floor, yes?"  She looked at me dumbfounded and said, "I did work there then, why".  I told her that she was Reagan's nurse for several days both before and after her brain surgery.  I told her how much we appreciated everything she did for us then.  She felt terrible because she didn't recognize us, but as we were leaving she apparently looked up Reagan's chart and did find her notes from several days during Reagan's stay.  She seemed very happy to hear we remembered her.  Small world!

We also had a follow up appointment this week for Cole with Dr. Jeffries, his opthalmologist.  We go every six months with dilation every year.  It was another frustrating appointment and yet another good learning experience.  I prepared Cole for what to expect, but they insisted on doing the vision test starting from the furthest point (sitting in the chair) to see how well he could read the pictures on the monitor on the far wall.  Unfortunately because it's so hard for him to see he gets very frustrated very quickly.  After some coercion we moved him more than half way to the monitor and were able to start getting him to focus on the task and complete the exam.  There was a second exam/machine that required him to put his chin on a shelf, his forehead against a bar and look into a small hole at a picture.  Unfortunately we were not able to get him to complete this test and will try again at our next appointment.  Hopefully I will be able to convince them to start closer to the monitor next time to prevent the frustration and meltdown.

Although I often hear 20/20 vision and know that means you have "perfect vision" I never researched what it means if you don't have perfect vision.  Obviously I have 20/20 vision or I would probably know this.  So a quick search on the measurements reveals the following information.  If you have 20/60 vision it means you can see at 20' what most people can see at 60'.  So you have to be closer than most people to see the same image.  You are considered legally blind when you have 20/200 vision.  Unfortunately Cole has 10/200 vision, which means that he sees at 10' what what most people can see at 200'.

As his mom, I worry about how he's going to get to work if he can't drive.  Where he's going to have to live to have access to a bus or a metro.  I worry about how he will take a girl on a date.  I worry about how he will take his kids to Tae Kwon Do practice.  But I try to remind myself how lucky we are that he is here.  I try to remind myself how luck we are that he has any sight. And although I know we have so much to be thankful for, it's still so very difficult to feel like your child will have so many more challenges than most kids.  But we take it one day at a time, we advocate as best we can, and we try to realize how far he has come.  And it is so apparent in this side by side picture!  It was recommended that our next step is to see a low vision specialist to start learning what tools and resources are available to people with visual disabilities.  I called and made an appointment with Dr. Alibhai at Low Vision Services in May and look forward to making new connections.  I will post another update next week after meeting with the Neurologist!


Easter and the Tooth Fairy

It feels like a long time since I've posted an update and I have several to share!

The first was a really nice Easter spent with family.  The kids were pretty excited that the Easter bunny left them baskets and we had a lot of fun doing three different egg hunts this year to include one with Emma and Luke Golino at the Algonkian Golf Club.  We had a lot of fun dying eggs and picking funny face stickers for each one.

Another big update is that on April 9th, at age 5, Reagan lost her first tooth!  She was super excited when it started getting loose about two weeks ago.  She was in Tae Kwon Do class when it shifted and was sticking straight out.  Daddy pulled it quickly and she went to the bathroom to clear the blood.  She was pretty excited to see that the Tooth Fairy brought her a $2 bill!  Many of her friends at school had already lost teeth so she was very excited to be part of the "club".

I've promised to start including funny quotes from the kids.  Cole had a funny one this week.  He unfortunately wet his pants.  I asked why he had an accident and he said, "Mom, it's not my fault, I didn't do it.  My penis did it!"